Combatting the disproportionate rate of HIV infection among young women

In many ways, 2017 marked a sea change in the movement for women’s equality — from the global phenomenon of Women’s Marches, to the women speaking out against sexual assault and harassment in many industries and countries, it’s clear plenty of women are energized to fight for their rights.

And yet, gender inequality still indisputably persists around the world — in forms both eminently overt and less so. The disproportionate rate of HIV infection among young women is one crucial example of the latter. In 2015, nearly 390,000 young women between the ages of 10-24 newly acquired HIV globally. The rising rate of HIV infection among this group of women — the vast majority of whom lived in Southern Africa — was not replicated in their male counterparts.

The women affected by this phenomenon, of course, are so much more than a statistic. The International HIV/AIDS Alliance recognizes this and in the lead up to World AIDS Day on December 1, launched the ‘READY to Decide’ campaign, which uses the personal stories of young women living with or affected by HIV to highlight the gender inequality at the heart of the problem.

Luisa Orza, Technical Advisor on Sexual and Reproductive Health and Rights for the HIV/AIDs Alliance, offered more context and explanation of this problem — and what we can all do to help combat it.

First, can you tell me about your experience working with this problem? How did you first become aware of it and what work have you been doing to combat it?

I’ve been working on gender issues in the context of HIV since 2004. Working with women living with HIV at that time, it was becoming very apparent that there was a huge disconnect between the fields of sexual and reproductive health and HIV.

Advocacy, participation and leadership among women and young women living with HIV have brought much greater attention to the needs, priorities and rights of this group over the last ten years or so, and much greater attention is now being given to programming for adolescent girls and young women.

I’ve worked with an amazing cohort of young women living with HIV over the years. They have been tremendously resilient, articulate and passionate. One of the things we advocate for and are deeply committed to is the meaningful involvement of people – in this case young women – living with HIV in defining and shaping the response. For me, young women’s leadership is the key, with a focus on promoting and fulfilling their right to make decisions about their own bodies, sexual rights, choice and agency.

Can you recount some of the conversations you’ve had with young women who have been newly infected? What have their experiences been like — from the physical and psychological impacts of living with this infection to the cultural ramifications (if any) they deal with in their communities?

Young women’s experiences are different of course, depending on their individual circumstances. There’s also often a big difference between those who have been born with HIV, and those who have acquired it as young women. Many of those born with HIV have had to cope and come to terms with the loss of parents, and work through very complex feelings of grief and sometimes blame and shame. Some may not have had their own status clearly communicated to them by their parents, and have only learned that they have HIV themselves as a result of media campaigns about HIV treatment (gradually realizing that the medicine they are taking is the same one they are seeing on the TV ads), or have their status revealed to them by a brusque medic. Others may have learned their status in a supportive and loving family environment.

For young women acquiring HIV through sexual relationships, it’s important to recognize the myriad factors that might be at play, which could involve transactional sex, pressure or coercion, or violence, but there’s also young women being young women and wanting to experience pleasure, sex and intimacy, because it’s great – and part of growing up. One of the things we focus on is trying to create an environment in which it is safe for them to do this.

When we talk to young people about their needs and priorities, five things come out very prominently: the need to access services that are friendly, and provide high quality care without judging them; the need to have access to comprehensive, accurate information about their sexual and reproductive health; the need to respect their rights as young people; the need to address gender inequality and gender-based violence; and the need to involve them in decision making.

Recognizing diversity is at the root of the work we do with communities, we try to situate our work in the complicated and often ‘messy’ realities of the young women and girls we are working with, to bring about those changes. Peer support is also an incredibly important factor in terms of accepting an HIV positive status, starting on and adhering to treatment, and living positively with HIV, which includes being able to enjoy happy and pleasurable sexual relationships.

Is there any recognition in these communities that there is a gender disparity at play here? How is the reality that women are disproportionately being infected playing out in these communities?

There is increasingly an awareness of the gender disparity in HIV prevalence among young women compared to young men, and increasingly this is being seen in conjunction with other sexual and reproductive health issues, such as the high rates of unintended pregnancies – which often end in unsafe abortion – among young women. The underlying factors are the same.

There are important initiatives currently being implemented working with boys and men to understand and challenge gender and cultural norms, which are disempowering and harmful to young women.

What possible explanations have researchers found about why this gender disparity in terms of new infections exists?

It’s largely acknowledged that the gender disparity in new HIV acquisition in this age group is down to a combination of biological, behavioural and social/structural issues. In heterosexual relationships, the vagina is more susceptible to HIV acquisition than the penis, and this vulnerability is exacerbated greatly in the case of sexual coercion.

Behaviourally, girls in this age group typically have sex with older partners. Until recently it was thought that the ‘sugar daddy’ phenomenon of inter-generational sex was driving this disparity, but more recent research shows that young women are typically in relationships with men about 8 – 10 years older than them. That still exposes them to a population with much higher HIV prevalence than their counterparts.

Then there are the social/structural factors that drive transmission; these include lack of widely available, accurate, and comprehensive sexuality education; cultural and religious ideas about who should be having sex, when and with whom, which can make it difficult for girls and young women to access contraceptives and condoms; violence against women, and within specific populations of women, such as sex workers and transgender women; and imbalances of power: girls in relationships with older more experienced men are very much reliant on those men to take the lead, and that trust can be misplaced.

The relationship between violence against women and HIV is complex and multi-directional, and impacts on their personal agency – their ability to make and carry out decisions that affect their lives.

In terms of HIV acquisition, violence can be a direct cause – a result of sexual violence or rape. It can also be indirect, whereby the experience of being in violent relationships makes it more difficult for women to negotiate safer sex; there is also evidence that men who perpetrate violence are more likely to be living with HIV themselves, have multiple sexual partners and drink more. Women who have experienced violence are likely to have lower self-esteem, or may have other chronic mental health issues like depression, and these can also act as a barrier to safer sex practices, or they may be more likely to use alcohol and drugs. So it’s quite a complex and cyclical set of factors.

In addition, HIV diagnosis and disclosure can act as a trigger for violence in relationships, because it’s often women who find out their HIV status first – in ante-natal care, or just because women tend to use health services more than men. So women are often blamed for ‘bringing HIV into the home’, and can experience rejection, abandonment, physical and psychological violence – for example being told they are lucky their partner has decided to stay with them, that no-one else would want them, and so on. This is often used as an excuse for having other relationships, and/or exerting control in other ways.

Women living with HIV are also exposed to violence in other settings such as health services, where they may experience harsh and judgmental attitudes from health providers, especially in relation to having children. Cases of forced sterilization among women living with HIV have now been well-documented in a number of countries. Health policies can also put women in a position where they are more likely to involuntarily disclose their status both to partners and other members of their community and this can also put them in danger. Violence in the home is also one of the biggest barriers to women’s adherence to HIV treatment and retention in care.

Beyond violence, what are some other major risk factors that increase women’s vulnerability to getting infected, and why?

Lack of access to information, services, contraception, cultural sensitivity around sex and sexuality, especially among young adolescents – and a vast range of inconsistent messages that children and young people are exposed to. Often they are told that sex is bad and that they should abstain, but sex is portrayed everywhere as something fun and exciting. Children are often exposed through media – and increasingly the internet – as well as the activities of the people around them, their parents and communities, to sexual activity at a very young age, but are then expected to do what? Just ignore it?

What is being done to address this problem? What can people do to help?

Talk about it. When there are cases of violence, listen to young women and stand by them. Raise girls and boys to understand gender and power dynamics at play so that they grow up in an equal world. Speak up and demand justice when there are cases of violence. We must not tolerate it in any form. And let’s trust young women to know what they want and need, and involve them in shaping, delivering and evaluating the effectiveness of programs. Stop programming ‘for’ young women, and start programming ‘with’ them.

Globally, countries are committed to meeting the Sustainable Development Goal 5 on Gender Equality, which includes an end to gender-based violence. Our governments and donors have an important role to play and must continue to invest in young women because now, more than ever, it is time for girls and women to decide.